Crying is part of normal behaviour and there can often be a simple straight-forward reason that can be easily addressed.
However, crying can signify pain or some other cause of distress. In a normal child who can communicate their feelings, it can be possible to determine the cause.
However, just as in babies or infants who cannot yet talk, individuals with a CDKL5 disorder are not usually able to express themselves or communicate sufficiently. In this situation, it can be very difficult to understand and identify a cause and this can lead to considerable distress to parents or carers.
Parents will usually develop a checklist of the common things they know to address if their child starts to cry. It might be something simple like they need a drink or they are hungry. They may need a nappy change or just be tired and need to rest.
Sometimes they may need a change of position or be too hot or too cold or perhaps just be in a grumpy mood and need cheering up – just like us! However, if their crying persists despite checking the simple things then it is worth thinking of other causes.
There is potentially a whole range of problems that will cause a child with a CDKL5 disorder to cry and become distressed. Clearly, there will be some uncommon causes and there may even be particular issues that are specific to CDKL5 that we have yet to learn about. It would be impossible to cover all the known potential problems here, but we have tried to cover a few of the common causes.